I have started this post a hundred different times, a hundred different ways. Reminding myself it doesn’t need to be perfect, it just needs to be real, raw, and authentic to what I am experiencing and feeling. Just get it all out.
Damn, that is harder than it sounds for me right now. I am not sure what I am feeling. I am walking around numb, invisible, and like I can’t win most days. I keep telling myself “just one more day, just give it one more day”. The next day, I tell myself the same thing again and the day after, and the day after.
With every specialist’s appointment, I think I am going to get answers but instead, I just get handed slips for more tests and bloodwork to have done and follow-up appointments scheduled. I have spent the past 6 months having bloodwork drawn, peeing in cups, various tests done (including a full-body ultrasound), filling out extremely thorough questionnaires, seeing new specialists, being sent for second opinions, getting new diagnoses, having other diagnoses questioned (by specialists and me), being fat-shamed, questioned about why I am seeing so many specialists, told to get my mental health in check, that everything I am doing isn’t enough and that I need to do more.
After each appointment, I feel like I am no closer to understanding what is happening to my body and what is the best approach to take to help it heal.
I am grieving for the person I used to be and the person I want to be.
Recently one of our local zoos began their homeschool days again. You have to call to coordinate the day along with how many people will be attending. With documentation, it is free. My kids and I LOVE going. It took me until I heard the voicemail of the homeschool coordinator for me to remember that this isn’t an option for us now. The zoo is entirely outside and I have Solar Urticaria. Fail!
Socially distanced outside meetups with friends, festivals, dinners out, outdoor events, leisurely drives are a hard no. I have a single friend that I see occasionally. I am so incredibly thankful for them.
Being excluded from events your family plans because it is easier to not have you there. Trying to not take it personally is really hard. Realistically, you know you can’t sit outside at the restaurant’s patio and eat dinner but they can. Listening to all the fun they had and memories they made while you sat at home…again. Feeling invisible.
When your husband opens the sunroof canopy before you get into the truck more than once and you don’t catch it and the drive causes massive hives, crazy nausea, and burns as a result even though you are in a thick hoodie with a shirt underneath, and jeans. You know he doesn’t do it on purpose. He just doesn’t think about it or how it affects you. Feeling invisible.
My specialists love to keep telling me to constantly lose weight, watch my portions, stop eating junk food, and get outside to work out. Just go take an afternoon walk…
Me: Blinking, opening my mouth to say something about the 50+ pound weight loss and 5 clothing sizes, the fact that I can’t overeat even if I wanted to because one of the main side effects of several of the medications I now take is appetite suppression. Another fun side effect is vomiting if I do overeat. Let’s talk about the fact that I eat 800-1000 total calories daily. I eat 3 small main meals a day with “snacks” every 2 hours. I watch everything that enters my body and make sure it is as nutritious as I can make it. How about I skip the afternoon walk outside with my solar urticaria but instead I continue to find stores that aren’t too crowded to get my daily steps in like I am already doing? Let’s not forget about the pain I am in constantly. What can I take or do to help with that? Is taking 4 Motrin daily ok or should I increase it to 8 daily (4 in the AM and 4 in the PM) if needed? And can we talk a second about the debilitating exhaustion that I feel when I have pushed my body past what it can do?
Instead, the doctor tells me that the nurse will be right back in with my labs and testing slips and quickly leaves the room. Leaving me sitting there feeling invisible.
My therapist, that I started seeing as soon as I got the whole bloodwork thing back and everyone started to panic, keeps thinking I am shoving my emotions down or that I don’t want to discuss them. That is not true. The reality is that I feel numb and invisible. It isn’t that I don’t want to talk about it, I literally don’t have the words. I need to cry. I need to ugly cry, I mean sob until I am in the fetal position and have nothing left. I have not cried in the last 6 months. Not because I don’t want to. I know I need to do it. I just can’t. Literally, I can’t. As we talked about the last session, maybe I am stuck in one of the levels of grief. Maybe blogging it out is the best way for me to get it all out.
All I know is that I am not stopping. I will continue to give myself one more day. I will figure out a way to heal myself and live with my new norms. I will make my life amazing. Because I deserve it.
Oh, and to the specialist that told me that my issues are related to my out-of-control diabetes and Hashimoto’s at my appointment in Dec…Like I said was going to happen, my latest test results came back at the end of January revealing that I am pre-diabetic in 6 months! That’s right, I am no longer considered a diabetic. I am .03 away from not being pre-diabetic. I requested bloodwork in 3 months to celebrate not being diabetic in any way! And just in case you were wondering, my Hashimoto’s is STILL under control and has been for the last 6 months as well. Have the day you deserve.
2 Replies to “6 Months Later”
You have always been your body’s best doctor. As much as you need the medical teams to diagnose and prescribe treatments, SOOOOOO MUCH of your healing has always been at your own hands. I’m so sorry you’ve been feeling invisible and that is been harder for us to get together. I can’t imagine what this ordeal has been like for you and my heart breaks a little more with each new revelation of what you can’t do (for now). It’s discouraging AF, but please stay hopeful. You’ve got this and you’re doing the dang thing. Keep up the great work!
If it would improve your situation I would cry for you – your story brings me to tears and hurts me reading. I wanted to reply as soon as I had read it – the day it was posted – but I had no words. I know you try your darndest, you are a fighter! Trust in your intuition! I will be lifting you up to Jesus our ultimate healer who healed even when he was not “supposed” to. Enough words – just know you are loved!